Amity

New Member
Amity,

How is your little guy holding up? Can you go back to the roller rink if he has a good week at school? That sounds like a great stress reliever, except for me. I spend too much time on my bottom and not enough time vertical.
Hi pigless it's been an interesting first week took some people's advice and tried out a high-protein high-fat diet. For the first 3 days it seemed to go well then I did some experimenting with some grain free baking and Friday his dad came over and we saw some agitated Behavior. This is not uncommon when his dad comes over because it changes the routine. It seems his dad goes out of his way to be inconsistent that is his only consistency. After his dad left I caught him gobbling down extra baked goods and a few other items. I know he wasn't necessarily hungry and supper was quite filling. However so far he seems to be doing okay at school first day took us an hour to get into the classroom. She was fine until the rush of all the kids and then the newness of the classroom. He does have some familiar faces in his classroom and he was very excited to find one of his favorite people there. Teacher said he is doing well so that is a relief but he comes home and he drops all his good behavior. It's almost as if leaving the bus gives him permission to just be himself and to stop trying so hard to be good. My 19 year old daughter was ADHD and on a methylphenidate. His behavior when he comes home is right on par with why we gave her medication. He's never shown signs to really need such a thing. I'm trying to be patient. The computer is still such a huge issue he desperately wants to be on it but we can't seem to get off without Force. We set timers, we give incentives and we have even kept it for the last thing we can do at night. Nothing seems to change his inability to stop playing willingly. On Thursday he got the next DayZ screen time taken away because I literally had to go unplug the computer to get him to go to bed. He kicked he screamed, he called me names, he told me how he hates his family, that we all are a bunch of jerks. The next day (Friday) he had to be reminded about 10 different times why he couldn't get on the computer. He begged he cried he kicked people he was mean. And then I went and change sheets made beds and came back to find him on the computer. Getting him off was a whole nother ordeal. I am not sure why this I'll keep sending him off so much. This may be another post entirely. LOL
 

susiestar

Roll With It
The neurological disorder that Fran mentioned was Prader-Willi. If you google it you will get some interesting information. If he is eating non-food items, it could be pica. That can come on due to nutritional deficiencies or for other reasons and is another neurological thing (pretty sure it is neurological). Though now it seems there is also a Binge Eating Disorder that they are treating with medication, so that may also be a thing to consider. I cannot recall which medication it is, I saw a commercial for it.

As for getting them off of the computer, that is always a chore. It was never easy with my kids either. Is there a way to have a talk when he is not on the computer to explain that when he kicks and screams and says awful things, it makes you want to say that he cannot be on the computer for an extended amount of time, say a week? Tell him that you don't want to do that, but when he goes into a rage when his computer time ends, he scares you. It isn't fair or right to frighten the people in your home. How would he feel if you had to stop using to computer to go fix dinner and you yelled and screamed at him over it? Can you take a video of him throwing his fit and then sit down and show it to him? Don't sit down during the fit. Wait until the next day, at a calm time, and then tell him you need to talk to him. Ask him what he thinks about how he behaved? Was it fair to the rest of the family? Was it responsible? Did it show self control and maturity? Could he hurt someone? How would he feel if he hurt someone? What if he broke the computer during his fit? Certainly if it got broken during a fit and got replaced, the person who threw the fit might not get to use the new comptuer much, would they? They couldn't be trusted to be safe with it.

I know you are using reminders and timers and things, but are they getting his attention? Is he actually aware of them? It is my guess that he isn't even aware of the timers or reminders. I know that may be hard to believe. My kids could even reply to me that they heard and understood, but often they had no idea what they heard and understood. I had to make them stop what they were doing and LOOK at me, and actually engage with me before I reminded them. Otherwise I was just like the teacher in the Charlie Brown cartoons "Wah Wah Wah" in the background. That is why I came up with using chocolate pudding, chocolate chip cookie dough, etc... with my family. That was currency that worked for them. It might work with your son to. I bet he could hear you talk about fixing everyone a slice of chocolate cake even if he was on the computer. Maybe not. There may be something else that is his "currency", the key that will gain his attention.

I realize you may not want to use food. That is fine. When you remind him, go to him and gently make sure his face is looking at you, that he is looking you in the eyes when you remind him. It is one way to make sure he hears you. Once you have him looking into your eyes, then you speak. Not until then. That is a trick I learned from a special education teacher I greatly admired. She would know a student was absorbed in something and wouldn't hear a reminder or directions to do something. Rather than yammer over and over, she would turn his head (gently) to face her, get onto his eye level, and when he was looking into her eyes, she would say what she needed to. Then they could go back to their game. It was astoundingly effective. Maybe it will help you.
 

pigless in VA

Well-Known Member
I suspect that it is absorbing all his energy to behave in school. He may have access to computers there, so you may need to work with the teacher on getting him off of it. I worked with one girl last year who I am convinced should never be on a computer ever. She attacks people when it is time to turn it off. Nothing worked. I think there are times when something is SO engrossing, that it should not be around.

You have a long way to go with your young fella. Keep working with him. Keep trying different things. My SO found a way to turn off internet access to specific devices at a specific time of day. Click. It was off. No one had to touch anything.

I'm glad he has a friend at school. That can make all the difference.
 

GoingNorth

Crazy Cat Lady
Prader-Willi syndrome can be easily tested for. Most children with Prader-Willi are born with very low muscle tone and most are unable to feed easily, hence fail to thrive in early life. The eating obsessivly kicks in when the chidlren are young toddlers. Prader-Willi children nearly always have light skin and hair, blue eyes, and smaller than normal genitalia. PWS child also display varying autism signs, raging (especially over food). They have to watched very carefully as they will eat anything in sight, including garbage and non-food items. Basically PWS turns off the satiety signals sent by the stomach to the brain. PWS children literally are ALWAYS "starving" because their system never tells them it's had enough food.

Adult PWS patients usually have to live in group homes where their diets can be extremely carefully monitored, and food can be secured. Otherwise, PWS patients can and will eat themselves death.
Also, PWS patient often lack the enervation required to vomit, which makes the obsessive eating even more dangerous. In fact, I went to school with a little girl who had PWS. She died at 10 years of age from a ruptured stomach and small intestine after being sent to relatives for the summer. Unfortunately, the relatives couldn't bear the crying, screaming, and outright raging over food, and let her have what she wanted. Scared the heck out of me as I was 10 and going through a hellacious growth spurt and downing ridiculous amounts of food at a sitting (and in between meals). Here I was, after hearing that school friends "stomach had burst because she ate too much" put me off of eating for a bit for fear the same would happen to me.
 

BusynMember

Well-Known Member
Most kids who eat a lot dont have Prader Willi. My son was tested for it. Prader Willi kids also tend to be slow learners. I covered everything with my son.

Autistic kids do tend to overeat and because they dont have good imaginations (another symptom) they like video games and television. That way they are entertained by the game or television show. The lack of imagination makes them fiddle with things, toss balls, often break things if nothing is entertaining them. At 24 my son still loves videogames and movies although he can stop doing both if he has to and no meltdowns or even arguing. At six, yes, he would have raged, but that was whenever we tried to get him to stop one activity to do another. It was not exclusive to videogames and transitioning is also hard for our autistic kids.

As for school, kids are often taught a lot on computers now. I doubt it will change. Times have changed. Times dont usually go back to the past. I dont know that he can do all classes without a computer. If he does, he will be the different kid...and they already now they are different.

Wishing you luck. You will figure this out.
 
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Amity

New Member
I don't believe we are dealing with PWS. Goodness that looked and sounded really scary Poor Babies.
I have been doing a higher protein/higher good fat diet for him for about 9 days. It is going well. Yesterday he brought home pockets full of graham crackers from the school cafeteria (unopened) and asked me if they were okay before eating them. It was my biggest clue that he gets it. He was a bit upset and tried to argue/bargain with me and I simple replaced them with an acceptable alternative and he was happy.
I tried to explain to the teacher that I am not restricting him from eating if he feels he is hungry instead I am offering fruits, veggies and other healthy options. If I need to supply the class with a fruit bowl I am happy to do so! She isn't super happy with me (oh well sorry, I know it isn't daycare but in truth yeah I expect that kind of care when I let my child leave my side and be some place else/with someone else). Food is the corner stone of our lives. We all eat, albeit not all the same way but we eat.

Yesterday I spent the entire day pushing my weight around (seriously this is just emotionally exhausting) for me this was hard. I hate pushy people I believe in treating everyone like they are a customer in front of me, they deserve my good helpful attitude. Until they don't and then I excuse myself from their presence lol. Yesterday I got through the counties special education director and had a one on one with her. She got it, she really really got it. I was shocked! Before I got home I started getting calls about setting up meetings and Invites to PAC meetings (parents of special needs kids) and I guess I said the magic words ( advocate and case manager) because she jumped into action. So thats the school side.
Today I am working the medical side and making calls to get a case manage through my insurance company and one through our local mental health authority. I am filling out paperwork for ABA etc. I am also going to be picking up my new lipscence colors because doing something for me is supper important today!

I just wana say how great you all are. Thank you for all the words of wisdom and encouragment. I seriously don't know what I would have done without feeling like there are others out there that don't think I'm crazy. :)
 

pigless in VA

Well-Known Member
advocate and case manager
Yep. Good work, Amity. You go, Mom!

A fruit bowl in the classroom is a fantastic idea. I was rather disturbed by the amount of candy available at school. So many teachers like to give the kids treats. At our school, there was a popcorn maker. We weren't supposed to give it to the kids, but I thought that was much better than the candy.
 

susiestar

Roll With It
Why would popcorn be off limits? Microwave bags of popcorn, yes. Make that off limits. It is full of truly nasty stuff. But a popcorn maker has far less nasty stuff in it. Or even a microwave popper that doesn't use the premade bags. I gave each class one of those almost every single year and each teacher loved it and used it all year. I also provided the popcorn if the teacher wanted me to. It is HEALTHY and CHEAP!! Why would you give candy when you can give that???

I think it is great that he came home and asked if he could have the crackers. You are making some progress. He took an alternative, which is serious progress.

I am glad you are getting things lined up. Going to the Special Education director was the right move. Often you do the best to just jump over the little people and go to the top dog. It really does get things moving faster. Don't forget to sent follow up letters in writing. There are form letters in our archives that you can use by filling in the blanks. This can help set in federal protections for your son. It also lets everyone know that you are keeping records.
 

pigless in VA

Well-Known Member
Susie, the popcorn was specifically for the teachers. We were not supposed to give it to the kids. We did sometimes anyway. :stalker:

At the end of the year last year, water bottles were banned at school. Apparently too many kids were throwing them at each other so administration banned them. Another brilliant move.
 

JRC

Active Member
Oh god. The water bottle thing with kids. Were they FLIPPING them Pigless? That drives me crazy.

My son is in an evaluation program this semester--45 day program. Guess what they give them for snacks mid morning? Gummy bears and skittles, potato chips. Seriously? My son came home and told me about it. Asked me if I could pack him grapes and peaches. No problem kiddo. :rolleyes:
 

pigless in VA

Well-Known Member
Yes, they like to flip them. How annoising! (word made up by a preschooler) We could have handled that. There was a large group who were pouring the water out onto classmates in the stairwell below them. Like more than 50 kids. That is what caused the ban.
 

Amity

New Member
My teens did the flipping thing omg its just down right obnoxious. Started taking them away from them too Everytime they thought it was an appropriate activity to do with in 20 feet of me. It was a thirsty summer lol.
Of all the things that could be used in a school why can't they all have a popcorn machine. Go ahead charge my kid 25-50a bag for snack time. I'd be happy to give it daily.
 

pigless in VA

Well-Known Member
It is a choking hazard. Remember when President Bush choked on some popcorn? Maybe they are afraid of lawsuits.

How is your young fellow doing in school?
 

Amity

New Member
It is a choking hazard. Remember when President Bush choked on some popcorn? Maybe they are afraid of lawsuits.

How is your young fellow doing in school?

I've about choked on air before, wasnt pretty. Funny after I regained my self and wiped away tears.

School is going ok. Working on so many things right now, wiped out for sure.
Posting in Special Education about all that going on. See my post there.
 
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